34. Getting through the wall

Miles 31 and 32 – As tough as it gets.

Way back at mile four I mentioned that our bodies store roughly 2,000 calories, which are burned at about 100 calories per mile while running, leaving nothing after 20 miles, except for extra calories taken on during the race.

The empty feeling of reaching the wall is different for different runners. The elite will have trained enough to barely notice it, but for the likes of me it was usually fatigue, cramp and significantly slowing my pace.

I always tried to keep shuffling along, though, and eventually I’d get through it and start to feel better.

Just as the Hollywood writers agreed to go back to work, my writer went on strike for a fortnight, at the critical point in the story. He’s back now, let’s hope he can piece together what happened, although, this week’s work is not going to be up to the usual standard. Sue has not had a chance to check it over, so all errors are down to me.

The last post was about my Stem Cell Transplant and we were literally having a walk in the park, so it was about time for the more unpleasant side effects to cut in.

As usual I will try to give you an honest account, but I’ll give a warning this time. If you are eating your dinner, or are a bit squeamish, it might be a good idea to skip this one and look again next week.

Day +4 from the return of my stem cells, Saturday 23^rd September, and we were still staying in the Cotton Rooms, visiting the Ambulatory Care department each morning for blood tests and medication. We took a walk in the morning to Regents Park, past the Royal College of Physicians where the Myeloma UK charity were holding their Southern Info Day. Next year we will be able to attend to listen to the speakers’ updates on the latest medical advances, and to network with other people living with Multiple Myeloma.

We met our son Tim and his friend, in London for a concert in the evening, and went to Honest Burgers for lunch, sitting outside, of course. I volunteered to pay the bill, then, understandably, needed a lay down afterwards. That was the first indication that my energy levels are subsiding.

The same day my gastric system – how should I put this – went from nought to sixty and kept its foot to the floor.

Day +5, Sunday, and my bloods started to show levels dropping across the board and I became neutropenic. I was struggling to find things I would like to eat.

Day +6, Monday, and I was exhausted, sleeping most of the day. My comfort food was honey nut cornflakes, bananas, cheese dunkers, custard and jelly. I took my tablets but threw them up. My PICC line was a week old now and required cleaning, a change of nozzles and new dressings. After that we went back to the room.

Day +7, Tuesday, and my temperature rose to 37.9 C, close enough to the 38 C threshold for my admission into the hospital. We were told to walk around to the A&E reception, then to report to floor 16 of the tower block. I stayed in overnight, while Sue slept at the Cotton Rooms.

Then I stopped taking daily notes. I have been laying in bed and sleeping for a week and a half since then, able to get to the bathroom, but not to walk around the building, eat solid foods or anything like that.

Rather than try to give you a diary of events, I’ll approach it from a few different themes.

—oOo—

Everyone is different. Of the four of us who had our Melphalan administered, and our stem cells returned within two days of each other, we all took our own paths. One never was admitted to a ward and remained in the Cotton Rooms until going home last week. Another couldn’t eat after the first day.

If anyone is reading this in anticipation of a stem cell transplant, your’s won’t be just like mine, so read with caution.

—oOo—

Mucositis took effect, despite all those ice lollies while the Melphalan was administered. My mouth has been extremely dry and all flavours have gone. After a few days of eating cornflakes, they too tasted like shredded cardboard. I have managed some soft foods like jelly, tinned peaches, yoghurts, but it turns out that you can get away without eating or drinking anything for quite a few days. The medical team keep you hydrated with fluid infusions as well as making up for any minerals on which you might be short, in particular potassium and phosphates.

My mouth was constantly dry, and still is to an extent. I kept a regular oral hygiene routine of brushing my teeth, then gargling with Benzydamine Hydrochlorine mouthwash. I also used a moisturising mouth spray, Oralieve, which works well for short spells. Still, I often woke up with my mouth completely dry, my gums sticking to my teeth.

It is not just the mouth lining that is affected –the whole stomach lining breaks down, all the way down. And at the far end it had been diarrhoea throughout. As one the of the nursing staff pointed out, at least that’s better than constipation.

—oOo—

I told you about G-CSF injections when I was preparing for the stem cell harvest a few weeks ago, encouraging the stem cells to grow like crazy and get them into the blood stream. Now I was given another round of injections to help the newly replaced stem cells get back into action.

The main blood cell types are White Blood Cells (including Neutrophils), Red Blood Cells (which contain Haemoglobin), and Platelets.

Neutrophils are part of the immune system, fighting infection. These are the ones the medical team monitor to judge recovery. No action is taken to replace them (other than G-CSF).

This shows my recovery. A few data points seem to be missing in the first graph: those were at zero but don’t get graphed.

Haemoglobin carries oxygen around the body, and mine seemed to keep going down. Rather than wait for the G-CSF to take effect, I was given blood transfusions of red blood cells for two days, to give me a bit more strength. The doctors expect it to take six weeks to three months to recover to normal levels.

Platelets prevent bleeding so again they couldn’t be left at zero, in case I cut myself or suffered internal bleeding. I had three platelet transfusions while at my lowest, and these have yet to show much recovery, but again it might take up to three months to fully recover.

—oOo—

Infection is indicated by a temperature spike over 38°C. I have had these every day most days, for a while staying at 39°C for days on end. Generally, the temperature has been dealt with by taking a paracetamol infusion. As for the cause of the infection, that is harder to tell. The doctors explained that they try different antibiotics while carrying out tests, but often the patient recovers before the actual cause is known.

I had a lot of tests and samples, and after a CT scan of my abdomen, the most likely culprit was Colitis.

My PICC line was removed after a week in the hospital, when my infusion intake was past its peak, as that is another likely infection source. It was replaced by a canula, which flops around like a Christmas Tree decoration.

—oOo—

For the first week in hospital I had a stack of three infusion drivers and one syringe driver, pumping away around the clock. Three minutes before they finish, they give an advance warning, then the alarm changes to a more urgent tone when they are done. On occasions when two or three break out in harmony, the cacophony is like a tropical rainforest, compared to the usual quiet with the occasional siren in the distance. For the first week, I didn’t get much peace overnight.

The staff were fantastic, working long 12 hour shifts. They remained cheerful even when I was at my least responsive, and using my patient call button non-stop. Chatting to them, most live quite nearby in London, usually within an hour’s commute. Without exception they love their jobs and are completely dedicated to their patients.

—oOo—

Sue was my rock, visiting three times, each time staying for two nights and sleeping on a camp bed in my room. She was worried about bringing in germs, but the advice from staff was that she should wear a mask and not come if she felt unwell, no more than that. There was no isolation room with positive pressure to avoid germs, and mask wearing generally was hit and miss. It looks like COVID precautions are over.

As well as that she was my press officer, keeping family and friends up to date.

—oOo—

Now I am on Day +21, Tuesday 10^th October, and for the last couple of days I have felt much better. I managed to eat toast and cornflakes, bolognaise and apple crumble today, which I could never have imagined a week ago.

I remain on an antibiotic until we are sure that my temperature spikes are over but hope to go home at the end of the week.

I have been able to walk around my rooms and along the corridors. I am looking west, with a panorama from the BT Tower to Primrose Hill.

There are some fantastic views on the south side of the building covering the City, Docklands and the London Eye.

At the end of the corridor is a vending machine with a difference. It’s for blood storage. Those nurses and their thing about veins!

Oh, of course, the hair. That started falling out about day 10, I think, so the nursing assistant removed the rest with his special plastic shears, with no risk of cutting me. Sue kindly called my bald dome “a thing of great beauty”. Brace yourselves …

Thanks for reading and take care.